My Personal Reflections on Judy Heumann’s Legacy

By now, the world knows through news outlets and social media that Judy Heumann, “the mother of the disability rights movement,” died on Saturday.

As I continue to process the events of the last two days, I’m grateful for what Judy taught me and the advice and wisdom she generously dispensed – sometimes unsolicited.

Historians and history books will pontificate plenty about her place in the annals of civil rights, human rights, disability studies, etc. But as I look back on what I learned, the lessons are much more personal, because while she taught us plenty about social justice, advocacy, and activism, the poignant lessons were simply about being a good human living life to its fullest – regardless of disability status. And that’s a statement in itself.

Always an educator, Judy showed – not told. My take-aways:

Everyone matters: Judy knew everyone, at any level – from the store clerk and restaurant server to the Senator. And she made time for everyone, heard everyone, learned from everyone, regardless of position or station, and treated everyone with kindness and respect.

Get angry – then get to work: If you came to Judy with a problem, you’d better have a plan. It wasn’t enough to complain; she was interested in how we were going to “fix it.”

Quitting is not an option: Sometimes, I came to Judy fatigued, battle-weary, and done. She was resolute: “You can’t quit – you’re finally in a position to make a difference, to make change, so you can’t leave.” You can get tired, and rest, but never quit in the struggle for human rights and forging institutional transformation.

Do the right thing because you don’t always get second chances: I’ve always felt first impressions can sometimes be your only impression, and a conversation with Judy really encapsulated this lesson. We were talking over dinner about her exchange with Trevor Noah, and his use of the word “able-bodied,” when Judy had appropriately set him straight with the word “non-disabled.” And she said reflecting, “Mariyam, I wondered if I should say something, because it was quick, and then I had to – I couldn’t not say something.” In that moment, she was educating millions, and there wasn’t a doubt about what she was going to do – what we all have to do to challenge the narratives of exclusion amidst the powerful and in the public eye, with grace, humor, and a quick wit!

“I don’t want to talk about work.”: Yes, fighting the good fight is important, but there’s more to life. Judy was more interested in my (and later my sister’s) love life than anything I had to say about politics, world affairs, or work. Relationships mattered to her, and it was vitally important that everyone, regardless of disability status, take active steps to have a well-rounded life. Lots has been said about the ability of persons with disabilities to have a range of meaningful human relationships, especially when disability has been the object of pity, curiosity, or worse, and Judy would re-center any conversation on what’s important – finding your soulmate, living, loving…

Live life to its fullest: When Judy retired from her last position in government, serving as Special Advisor for International Disability Rights at the State Department, I mistakenly thought we’d have more time together. She actually got busier, traveling, speaking, writing, podcasting… Busy living life, Judy made time to talk sometimes on the road – one day on a train to New York just before she went on the Daily Show. Until the end, she never stopped living it up, and will rightfully be remembered as the badass she was.

Saturday afternoon, March 4, aI stood holding her lifeless but still warm hand. My  heart disbelieved and begged her to live “just one more day,” just as she had asked of those selfless volunteers at the San Francisco sit-in, so that she could get up and fight for and with all of us again. Like many generations that will follow, I am among those Americans with disabilities who weren’t even born when Judy led that sit-in and fought countless more battles that have secured our human rights.

But I wasn’t alone in asking this of her. Scores of people, disabled and non-disabled, friends, family, colleagues, mentees, from the White House and all over the world had told her the same – on the phone, over Facetime bent over her bed as she lay peaceful and eerily silent… Judy, who had always had something to say, to teach, to share, was speechless…

Judy always calls the shots. This last time was no exception; so our entreaties aside, with a dear friend who was also present that day having the best line – “Judy, this is simply unacceptable behavior; there are easier ways to get out of speaking engagements than dying!” [Side note: Judy LOVED speaking engagements and seized any opportunity to connect with people.] Judy left us in her own way, surrounded by love, laughter, tears, and another priceless lesson in inclusivity as I – a blind, hijabi, devoutly Muslim -American immigrant woman – held one hand of a devoutly Jewish wheelchair-user who was herself the daughter of immigrants, and another person who Judy held close, more of her generation and likeness, held the other. In that stunningly silent moment, we were all connected in the cacophony of intense emotions.

As she takes her place in “herstory,” appropriately during Women’s “Herstory” Month, what I will consciously choose to remember is the grace, the humor, the chaos, and the clamor of excitement that was so characteristically Judy, a woman who lived life to its fullest and always on her own terms.


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3 responses to “My Personal Reflections on Judy Heumann’s Legacy”

  1. Arshad Avatar
    Arshad

    I’m praying for you and your content( blind hijabi) excellent future generation useful come

    Liked by 1 person

  2. Mohammed Poonawala Avatar
    Mohammed Poonawala

    Best of luck Mariyam for your new journey 👌

    Liked by 1 person

  3. Yakuta Rassai Avatar
    Yakuta Rassai

    A life worth lived… Mariyam very well penned with emotions and sentiments truly conveyed.
    Stay blessed

    Liked by 1 person

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ABOUT ME

Someone called me “the sassy blind lady,” and without my hijab, I’ve been describing as having a sassy ponytail! Sometimes you need sass, sometimes strategic patience, always a sense of humor, and more than a sprinkle of grit to live and bring about transformation.

AUTHOR’S NOTE

The views and opinions expressed by me are my own, do not reflect the endorsement or support of any individual or entity, and are expressed solely in my personal capacity.

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